Breaking the million dollar mark for the first time
by Beth Johnston and Erin Saxon, FSHD Society
On a sparkling morning this past September, against a majestic view of the Rocky Mountains, nearly 300 people in colorful T-shirts gathered for the FSHD Society’s Colorado Walk & Roll. Standing before them, Paula Lucey squared her shoulders and spoke about how her daughter’s diagnosis with FSHD drove her to volunteer for the event.
“Shortly after Sarah’s diagnosis, I found the Denver FSHD Support Group and have been involved in it ever since,” she said. “I remember the meeting when one of the members shared her idea of having some sort of fundraiser in the Phillip S. Miller Park where, pre-FSHD, she used to run. I also remember the many subsequent planning meetings, and darn if we didn’t pull it off – the first Colorado Walk & Roll to Cure FSHD!
“And here we are at number nine,” she marveled, “and now Walk & Rolls are taking place across the country and collectively have raised $3.5 million!
“I want (Sarah) and others with the disease to have treatment choices that lessen their suffering, stop the disease progression, and repair damage already done,” Paula went on. “And I want a cure. I want FSHD to be a thing of the past.” To loud cheers, she thanked the crowd for “helping to make that happen.”
The Colorado Walk & Roll was one of a remarkable 25 in-person events held across the US and Canada this year. Our signature Walk & Roll to Cure FSHD is the only international event focused solely on funding progress for FSHD. This remarkable initiative is driven by fiercely dedicated volunteers like Paula, with support by a small staff at the Society. It’s a source of immense pride and celebration within our community.
What started as a grassroots effort has grown into a powerful movement, with 175 teams and more than 1,700 participants joining forces to raise funds and awareness for FSHD. Together, we have for the first time raised more than $1 million. Incredible! A significant boost came from a generous anonymous matching gift of $250,000, fueling the momentum of our cause.
Since the launch of the Walk & Rolls in 2018, we have raised more than $3.5 million to fund groundbreaking research, support programs that accelerate treatment delivery, and provide invaluable patient education and support.
This year marked a significant milestone as we celebrated the addition of two new Walk & Roll locations in Canada – Calgary, Alberta, and Vancouver, British Columbia – joining the Toronto Walk & Roll, now in its third year. The FSHD Society’s partnership with the FSHD Canada Foundation is not only expanding FSHD communities across Canada but also driving crucial research programs and clinical trials for Canadians.
Igniting hope, fueling progress
But the impact of Walk & Rolls extends far beyond the numbers. It’s about community, hope, and empowerment. This disease can be isolating, but the Walk & Rolls draw individuals together, amplifying our voices and nurturing a shared aspiration to reach a cure.
“The aspect of FSHD that actually caught me off guard is how isolating it can be,” said Tara Hill, leader of the North Texas Walk & Roll, now in its second year. “Yet, during the Walk & Roll, we reach out to each other across our local communities and across the continent, and we face this experience as one group. That’s what I see when I look at all these Walk & Roll celebrations: Communities supporting one another as we move toward a treatment and cure.”
Sue Aumiller, Columbus Chapter director and pioneer Walk leader since 2018, shared the immense sense of empowerment she has experienced. “In 2017 our son, Bill, was diagnosed with FSHD. Shortly thereafter, my husband, Bob, was diagnosed,” she said. “Our new reality was the impetus that ignited my desire to get involved and do whatever I could to move the needle forward for the delivery of treatments for this disease.
“This year marks our sixth Walk & Roll, and our simple endeavor has raised nearly $400,000 for the FSHD Society,” Sue continued. “I encourage everyone who has a stake in this disease to get involved!”
One day soon, the news will break, and we will celebrate the first-ever FDA-approved treatment to slow the progression of FSHD. And we will know that we played a pivotal role in it.